Involvement in decision-making and breast cancer survivor quality of life.

Objective: This study examined the long-term effects on women's health related quality of life (HRQOL) of involvement in decision-making about their treatment for breast cancer and about follow-up care after treatment. Methods: Using a cross-sectional survey design, a sample of breast cancer survivors from Western Washington who were 2, 5, and 10 years postdiagnosis were recruited via a cancer registry and interviewed about their HRQOL and their involvement in decision-making about their cancer treatment and follow-up care. Main Outcome Measures: HRQOL was assessed using the SF-36. Results: Multiple regression analyses examining demographic and disease characteristics revealed age, and education, but not stage of cancer at diagnosis, to be significant predictors of perceived involvement in decision-making about cancer treatment and follow-up. Controlling for demographic and disease characteristics, perceived involvement in decision-making about treatment overall, surgery, chemotherapeutic treatment, and follow-up care were each associated with improved HRQOL, including the general health and vitality subscales of the SF-36 (p     

The MOS SF-36 health survey questionnaire in severe chronic airflow limitation: comparison with the Nottingham Health Profile

This study documents the cross-sectional, health-related quality of life (HRQOL) measures obtained at baseline for patients with severe chronic airways limitation (CAL) being assessed for home oxygen therapy (HOT) at the Flinders Medical Centre, Adelaide, South Australia. Two generic quality of life instruments, the Nottingham Health Profile (NHP) and the Medical Outcomes Study (MOS) short form 36-item questionnaire (SF-36), were administered by interview to the same patients to permit comparisons to be made between the two instruments. SF-36 mean scores were also compared with scores obtained in separate studies of a South Australian elderly general population and of groups of Australian subjects with various medical and psychiatric conditions. NHP mean scores were compared with scores from an elderly group of Adelaide residents from a household survey. HRQOL measures were obtained for 60 patients, 32 males and 28 females. At assessment for HOT, patients with severe CAL were experiencing severe impairment in their quality of life in comparison to age-matched South Australian norms, with physical disability the major limitation. There were several significant correlations between the domains of the SF-36 and the NHP which were predominantly gender-specific. Only small decrements in mental health were found with the SF-36 questionnaire. The SF-36 and the NHP appear to provide discrepant information for severely disabled CAL patients for the subjective domains of emotional and mental health.     

Quality of informal care is multidimensional.

Purpose: To demonstrate that assessing quality of informal care involves more than merely determining whether care recipient needs for assistance with activities of daily living (ADLs) are routinely satisfied. We investigated the extent to which potentially harmful behavior (PHB), adequate care, and exemplary care (EC) are empirically distinct dimensions of quality of care. Design: 237 care recipients completed the quality of care measures, and their caregivers completed psychosocial measures of their own depression, life events, cognitive status, and perceptions of pre-illness relationship quality. Results: Although PHB was moderately related to EC, adequate care was not associated with PHB and was only slightly related to EC. Psychosocial variables were not related to adequate care but were differentially associated with PHB and EC, providing additional evidence for the distinction between these measures of quality of care. Conclusions: ADL assistance can be adequate in the presence of PHB and/or the absence of EC. Declines in EC may signal increases in PHB, independent of adequacy of care. These findings produce a brief, portable, and more comprehensive instrument for assessing quality of informal care. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Quality of life: perception of lung cancer patients

An investigation was carried out to examine what quality of life means to lung cancer patients. 200 patients with either lung cancer (108) or chronic respiratory disease (92) were interviewed using a short open-ended questionnaire. They were asked to define quality of life in general, identify what they considered to be a good quality of life for themselves and to rank the relative importance attached to each nominated item. A content analysis was carried out and patients' responses were categorised into eight items. These were: ability to do what one wants to do/work, enjoyment of life, family life, financial security, happiness, health, living longer and social life/leisure activities. Of these, health (42%), enjoyment of life (25%) and family life (24%) were the three most nominated items as definition of quality of life in general. Patients perceived a good quality of life for themselves differently. Family life (58%), health (51%) and social life (43%) were found to be the most nominated components of a good quality of life for the patients. Overall, patients ranked family life and health as the first or second most important factors. There were no significant differences between cases and controls. The study results are challenging and serve to remind us that the term quality of life is misused in many studies. Most existing measures do not encompass the wider aspects of quality of life identified here, but rather concentrate on the "health-related" aspects of quality of life. To achieve this, the research into the best ways of measuring and assessing quality of life must continue to seek individual values and preferences and how these can be applied in a simple way in clinical studies.     

Health-related quality of life among the least dependent institutional elderly compared with the non-institutional elderly population

The purpose of this study was to investigate health-related quality of life (HRQOL) and functional ability among the least dependent elderly in residential care, and to compare them with information on the general population. A stratified systematic sample (n = 1,587) was drawn from a one-day census of patients in all public residential homes in Finland on December 2, 1991. Sixty-nine per cent of residents in 1992 were able to participate (n = 1,097) and 86% of them returned the questionnaire (n = 948), of which n = 795 were acceptable, the response rate being 72%. A postal survey was used for data collection. The personnel of residential homes were allowed to help residents complete the questionnaire, and 90% of respondents received such help. HRQOL was measured by the Nottingham Health Profile (NHP) and functional ability by a 14-item questionnaire. Finnish studies among the general population were used for comparisons. According to the NHP, the HRQOL appeared lower in institutional care and this was associated with the dependency level. Similarly, for most ADL items the general population had less restrictions than the least dependent residential care patients. In general, women expressed more difficulties in physical mobility and lack of energy than men. The longest stay elderly expressed better HRQOL. In multivariate models adjusted for age and gender those with poor vision had worse HRQOL in almost every dimension of NHP. Difficulties in speech were connected with emotional reactions and social isolation. Chronic illness limiting normal daily life predicted more problems in energy, pain, physical mobility, and emotional reactions. The married or widowed experienced less social isolation than single elderly. Higher education was related to better HRQOL in all NHP dimensions. Poorer perceived health was associated with lack of energy, pain, and emotional reactions. We conclude from these results that there are only a few clients in residential care whose HRQOL or functional ability compare with the non-institutionalized population.     

Health-related quality of life assessment in clinical practice

Assessment of biochemical responses to therapy is routine in the management of patients with end stage renal disease (ESRD). Assessment of health-related quality of life (HRQOL), however, is less common. Previous research indicates that HRQOL is a meaningful indicator that should be integrated into clinical practice. HRQOL is longitudinally evaluated in in-centre hemodialysis patients using the RAND 36-item Health Survey 1.0. Caregivers incorporate scores from this instrument into their assessment of patient functioning and well-being. HRQOL scores can be utilized to evaluate responses to changes in therapy, and to direct clinical decision-making, adding an important dimension to holistic, quality care for ESRD patients.     

Suppression of crossing-over by DNA methylation in Ascobolus

Interpretation of health related quality of life (HRQOL) results in cancer patients is facilitated by knowledge of the levels of HRQOL in the general population. However, direct comparisons can be misleading unless age and gender are considered. We demonstrate the derivation of age- and gender-specific 'expected' values from population reference values by means of simple calculations. This survey included 3000 randomly selected Norwegians above 18 years of age who received the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30 (+3) by mail. 1965 responses from 2,892 eligible persons (68%) were received. The population was divided into six disease groups based on self-reported health problems. The observed mean scale scores of the different groups deviated greatly from those obtained in the general population. The score for physical function, for example, was 72 for cancer patients and ranged from 73.3 to 82.5 in other disease groups, as opposed to 89.9 in the general population and 98.9 in those with no health problems. The range for one of the quality of life (QOL) scales was 57.7 to 84.7 compared with 73.7 in the general population. Expected mean scores for the patient groups were computed from the reference values, based on the concept of equivalence of age and gender. The differences between the observed mean scores and the reference values were strongly mediated by this method. The expected scores for physical function then ranged from 83.3 to 93.1 and from 70.3 to 75 for the QOL scale. The impact of age and gender on the reference data from the EORTC QLQ-C30 (+3) obtained in a general population shows that these variables must be considered when interpreting data on HRQOL for cancer patients. The demonstration of how to generate mean values which are adjusted according to the age and gender distribution of a population should increase the usefulness of this questionnaire among clinicians.     

Managed mental health care and independent practice: A challenge to psychology.

Suggests that the rapid development of managed mental health care systems has created serious problems for psychology. Addressed are several issues that are inherent in the manner in which psychology responds to the development of these systems, particularly whether effective psychological treatment must be compromised in such systems. A model of managed mental health care is described. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Health-related quality of life after epilepsy surgery: a Swedish multicenter study

PURPOSE: To investigate health-related quality of life (HRQOL) in relation to seizure outcome as part of a multicenter follow-up of epilepsy surgery in Sweden. METHODS: A battery including the SF-36 Health Survey and the Hospital Anxiety and Depression scale (HAD) was distributed to all patients older than 16 years. Mean follow-up time was 4 years (range, 2-13 years) and response rate, 91% (103 of 113 patients). HRQOL data were related to seizure frequency and severity (Chalfont Seizure Severity Scale). RESULTS: Seventy-six percent considered their global health to be better than it was before surgery. Degree of improvement in seizure control correlated with improved satisfaction with health (Spearman's r = 0.44). Higher SF-36 scores (higher HRQOL ratings) correlated with percentage reduction of seizure frequency for all scales and was strongest for perception of general health (Spearman's r = 0.46). When the patients were divided into four categories [A, completely seizure free (n = 29); B, seizure free with aura (n = 18); C, > or =75% reduction in seizure frequency (n = 24); and D, <75% reduction in seizure frequency (n = 32)], a strong positive association was found between higher SF-36 scores (with the exception of physical functioning) and better seizure control. Health-related limitations in role performance differentiated best between the outcome categories. For patients with > or =75% reduction in seizure frequency, low seizure severity correlated with higher HRQOL ratings for scales measuring social function, vitality, and mental health. Depression levels (HAD scale scores) were on average low. Anxiety (HAD) increased significantly from A to D. CONCLUSIONS: HRQOL seems to be scored as a continuum in relation to seizure frequency. Seizure severity measures give complementary information.     

Development of the quality of life in epilepsy inventory

We developed an instrument to measure health-related quality of life (HRQOL) in epilepsy. A 99-item inventory was constructed from the RAND 36-Item Health Survey (generic core), with 9 additional generic items, 48 epilepsy-targeted items, and 6 other items concerning attitudes toward epilepsy and self-esteem. We administered the 99-item inventory to 304 adults with epilepsy at 25 epilepsy centers. Patients and patient-designated proxies completed the inventory and were retested 1-91 days later. A multitrait scaling analysis of these data led to retention of 86 items distributed in 17 multiitem scales (Cronbach's alpha ranged from 0.78 to 0.92). Factor analysis of the 17 multiitem scales yielded four underlying dimensions of health: an epilepsy-targeted dimension, a cognitive factor, mental health, and physical health. Construct validity was supported by significant patient-proxy correlations for all scales and correlations between neuropsychologic tests and self-reported emotional and cognitive function (all p values < 0.05). There were significant negative correlations between the four factor scores derived from the HRQOL scales and neurotoxicity, systemic toxicity, and health care utilization (except for the correlation between mental health factor and health care utilization; all p values < 0.05). Patients who were seizure-free in the preceding year reported better HRQOL for the overall score, three of the four factor scores, and 8 of the 17 scale scores than did patients with a high frequency of seizures. Relative validity analysis showed that the epilepsy-targeted factor and three of its four component scales were more sensitive to categorization of patients by severity of seizure frequency and type than scales tapping physical health, mental health, or cognitive function. These cross-sectional data support the reliability and validity of this measure of HRQOL in epilepsy. The addition of an epilepsy-targeted supplement to the generic core improved the sensitivity to severity of epilepsy. The 86 items included in the field testing were supplemented by three additional items to form the Quality of Life in Epilepsy (QOLIE-89) inventory.     

Technology and true presence in nursing

If there is to be a future for nursing in the next millenium, it must be dictated not by technologic advances directly but by the manner in which technology relates with persons in health and illness. Technology enables nurses to care for persons in a more efficient and cost-effective manner. True presence, as articulated in the human becoming theory, affords members of the profession opportunities to be with persons in ways that make a difference to their quality of life. The article illustrates the recognition of the link between technology and true presence through the use of a nurse-person encounter.     

Examining functional content in widely used Health-Related Quality of Life scales.

Purpose: Assess extent to which generic Quality of Life (QOL) and Health-Related Quality of Life (HRQOL) scales include function in assessment of health, and identify health assessment items that are free of functional content. Methods: An expert panel on measurement of health and disability reached consensus on definitions of health, disability, and function. They assessed all items of all generic (non-condition-specific) scales in the 2006 ProQolid database for being important to measuring health as distinct from function. Ratings were summarized as content validity ratios. Retained items were written into standard format and reviewed again by the expert panel and a validity panel with expertise in specific disabilities. Results: Of 85 scales, 21 were retained as containing items important for assessing health. Scales ranged from 100% (BRFSS HRQOL, WHO-5) to only 4% of items rated as important. In further review of “important” items, functional content was identified in many of the items, particularly with regard to mental functioning. Conclusions: Popular generic scales of QOL and HRQOL vary greatly in the degree to which they include content on function. A pool of items can be identified that are relatively free of function. Distinguishing measurement of function and health is particularly important for people with long-standing functional limitations and for assessing the relationship of health with function. (PsycINFO Database Record (c) 2011 APA, all rights reserved)     

A taxonomy of health status instruments

Clinicians and policymakers are recognizing the importance of measuring health related quality of life (HRQL) to inform patient management and policy decisions. Self or interviewer administered questionnaires can be used to measure cross sectional differences in quality of life between patients at a point in time (discriminative instruments) or longitudinal changes in HRQL within patients over time (evaluative instruments). Both discriminative and evaluative instruments must be valid (really measuring what they are supposed to measure) and have a high ratio of signal to noise (reliability and responsiveness, respectively). Reliable discriminative instruments are able to reproducibly differentiate between persons. Responsive evaluative measures are able to detect important changes in HRQL over time, even if those changes are small. HRQL should be interpretable--that is, clinicians and policymakers must be able to identify differences in scores that correspond to trivial, small, moderate, and large differences. Two basic approaches to quality of life measurement are available: generic instruments that attempt to provide a summary of health related quality of life; and specific instruments that focus on problems associated with individual disease states, patient groups, or areas of function. Generic instruments include health profiles and instruments that generate health utilities. The approaches are not mutually exclusive. Each approach has its strengths and weaknesses and may be suitable under different circumstances. Investigations in HRQL have led to instruments suitable for detecting minimally important effects in clinical trials, measuring the health of populations, and for providing information for policy decisions.     

Does the "Thunderbirds syndrome" still exist

Rationing of resources within both the private and public health care systems is a fact of life. The Thunderbirds TV series encapsulated an idealistic philosophy that life should be saved independent of the pecuniary cost. Doctors, in particular, are trapped between their role as advocates for the patient within the "Thunderbirds" philosophy and as citizens with a responsibility to use resources wisely. This dichotomy is challenged by point of care rationing, which can conflict with clinical responsibilities, undermines the patient-doctor relationship and is often undertaken in a clandestine manner. This form of controlling health costs is difficult to justify from an ethical perspective, particularly when other forms of health care rationing and expenditure are frequently modulated by political expediency and inadequate economic modelling. Indeed, focusing on improving quality and disease prevention, rather than reducing marginal costs can often control the long-term growth in health expenditure. Doctors have a responsibility to ensure that rationing decisions are made but these should be made as part of a transparent, evidence-based and democratic process away from the point of care. While the resources to implement the "Thunderbirds Syndrome" have never been available, the philosophy must remain at the heart of patient-doctor relationship.     

Coordinated systems of community-based health care delivery: a vehicle for health care reform

The need for health care reform in this country continues to be high on the public agenda. Deficits in the access of United States citizens to needed health care services continues, despite recent efforts at health care reform. In addition, the health status of children in this country is of paramount concern. Significant threats to the health of this nation's children have spurred several proposals for reducing the cost of health care while improving the quality of outcomes. A sample of these proposals is analyzed. An example of a health care program which exemplifies one such proposal for health care reform is then discussed. Findings of a recent research project that is relative to the benefits of such a program are provided.     

Overview: maintaining outcomes for total hip arthroplasty. The past, present, and future

Developing and maintaining outcomes for total hip arthroplasty, resulting in meaningful and usable data, presents many challenges for today's clinician. Outcomes data collected must show patients' clinical, functional, and overall quality of life status. Data also must be appropriate to illustrate efficiency, effectiveness, and value of medical interventions provided to payers. Previous and current measures of assessing outcomes of total hip arthroplasty are presented, evaluated, and discussed. Recommended standards for the future, including the identification of specific data needed such as demographics, Short Form-36, patient satisfaction, length of stay, infection rate, return to surgery, and revision rates are introduced, leading to an outcomes based suggested standard of care for total hip arthroplasty with application to patients, providers, and payers.     

Assessment of medical care by elderly people: general satisfaction and physician quality

OBJECTIVE: To identify personal characteristics and factors related to health and patterns of healthcare utilization associated with the elderly people's satisfaction with medical care. DATA SOURCES/STUDY SETTING: Data from the 1991 Medicare Current Beneficiary Survey (MCBS) on 8,859 persons age 65 and over living in the community. STUDY DESIGN: Items reflecting general satisfaction with care and views of physician quality are examined and, based on factor analysis, grouped in dimensions of two (global quality, access) and three (technical skills, interpersonal manner, information-giving), respectively. The relationship of high levels of satisfaction in each dimension to personal characteristics of elderly people, and to measures of access and utilization, is assessed using logistic regression. PRINCIPAL FINDINGS: While satisfaction is high, with over 90 percent surveyed expressing some satisfaction, there is substantial variation with less likelihood of high satisfaction among those 80 or older, with less education and income and in poorer health. Longer waiting time at visits and less frequent visits are factors in lower satisfaction as well. A favorable perception of physician quality, especially regarding technical skills, appears to play a significant role in satisfaction with global quality of care. CONCLUSIONS: Studies of patient satisfaction in elderly people are rare. Some factors expected to be related to positive assessment based on earlier studies, were, e.g., better health and shorter waiting time, while others were not, e.g., increasing age. Elderly people appear to place greater importance on physician technical skills, as opposed to interpersonal dimensions, in assessing global quality. These findings suggest the need for a better understanding of how elderly people evaluate care and what they value in interactions with the healthcare system.     

Diagnosing neurofibromatosis type I in children

Neurofibromatosis is the single most common genetic disease of the neurologic system. Because neurofibromatosis type 1 (NF-1) is often diagnosed early in life, it is essential that health care providers deepen their understanding of this common genetic disorder. Children who meet particular criteria, as formulated by the National Institutes of Health, must be worked-up for NF-1 in order to initiate appropriate treatment implementation and evaluation. This article provides a review of the literature regarding the pathophysiology, clinical manifestations, and plan of treatment related to NF-1, specifically as it affects children. Clear guidelines for health care providers in primary care are outlined.     

Probability of particle and salbutamol deposition in the respiratory tract: comparison between MDI and Autohaler

QOL for children with chronic neurological diseases (CND) depends mainly on the supporting system of children's development and respite measurements of their families. For supporting children's development with CND and for alleviating the burden on the family members, various staffs are needed such as pediatricians, nurses, psychologists, OT, PT, home helpers, etc. Especially children with CND are living at home needs in-home services supplied by these supporting staffs. An in-home care service center is desirable to be established in their living area. According to the maternal and child health law and child welfare law, several measures have been adopted, but these services are not available for children with CND and their family, without registration as handicapped children. All these children should be treated because they have the same problems as physically or mentally handicapped children. The capability of the medical and social service supply has been influenced by recent decrease of the birth rate and improvement of the level in the maternal and child health. The number of facilities, such as pediatric clinics or nursing homes for physically handicapped children, is decreasing because of poor profit. These trends will be continued if appropriate measurements are not introduced. The final estimation of need and supply must be made at the local community level.     

Mental health pathways from interpersonal violence to health-related outcomes in HIV-positive sexual minority men.

Objective: We examined mental health pathways between interpersonal violence (IPV) and health-related outcomes in HIV-positive sexual minority men engaged with medical care. Method: HIV-positive gay and bisexual men (N = 178) were recruited for this cross-sectional study from 2 public HIV primary care clinics that treated outpatients in an urban setting. Participants (M age = 44.1 years, 36% non-White) filled out a computer-assisted survey and had health-related data extracted from their electronic medical records. We used structural equation modeling to test associations among the latent factors of adult abuse and partner violence (each comprising indicators of physical, sexual, and psychological abuse) and the measured variables: viral load, health-related quality of life (HRQOL), HIV medication adherence, and emergency room (ER) visits. Mediation was tested for the latent construct mental health problems, comprising depression, anxiety, symptomatology of posttraumatic stress disorder, and suicidal ideation. Results: The final model demonstrated acceptable fit, χ2(123) = 157.05, p = .02, CFI = .95, TLI = .94, RMSEA = .04, SRMR = .06, accounting for significant portions of the variance in viral load (13%), HRQOL (41%), adherence (7%), and ER visits (9%), as well as the latent variable mental health problems (24%). Only 1 direct link emerged: a positive association between adult abuse and ER visits. Conclusions: Findings indicate a significant role of IPV and mental health problems in the health of people living with HIV/AIDS. HIV care providers should assess for IPV history and mental health problems in all patients and refer for evidence-based psychosocial treatments that include a focus on health behaviors. (PsycINFO Database Record (c) 2010 APA, all rights reserved)